Hi, I'm a person living in the North East of England who has schizophrenia. I have been in and out of hospital between 2001 and 2004. This blog will be notes about my experiences as a patient (aka client) both in hospital and in the community. I can be contacted via email to schizopanic@hotmail.com. What is schizopanic? Its the panic that flashes through someone's eyes when you tell them you've got schizophrenia.

Monday, July 14, 2003

TO DO: Info on discharge:

3rd DISCHARGE : forthcoming discharge with Assertive Outreach Team cover.
DischargeDischarge is when you finally leave hospital. After you've been in hospital for a while either you're chewing at the door to get out, you're not bothered one way or another or you want to stay on. I've got mixed feelings about discharge, not being sure about losing 24 hour nursing cover which is where the Assertive Outreach Team comes in. There are some very obvious benefits to being discharged. You get back your privacy and ability to do what you want. During a medium to long term stay in hospital your state benefits get reduced drastically by the social services. This can be a very difficult time if you are trying to maintain a dwelling outside the hospital and is an added form of stress. Leaving hospital results in your benefits being restored to normal levels and the chance to apply for DLA - Disability Living Allowance.

Assertive Outreach Team (CAOT)This is a multi-disciplinary group of about 14 people that cover a certain geographic area. Berwick, where I was living, doesn't have a CAOT. Bedlington where I moved to, does - I moved house to be able to retrain and to get better health care. The people in Berwick (especially Florence my CPN) tried very hard but there are limitations as to what they can do. The people on the team are support workers, Occupational Therapists, Technical Instructors, Approved Social Workers (the approved bit means they have some sort of mental health training) and RMNs - Registered Mental Nurses. They visit people in the community a couple of times a week, sometimes once a day and talk to them, go for walks and help them with their lives - going on trips or sorting out shopping.

Occupational Therapy and the Outreach team (CAOT)The CAOT has its own occupational therapists (OTs) and technical instructors (TIs) who are taking over Fuchsia's work. So far we haven't done much apart from chat but one of the TIs has been very helpful with household chores - things like fixing a leaking tap or installing a doorbell.

Early Intervention Teams - things have changedWhen I was first psychotic, there was no follow-up after the episode. This has been described as a mistake already. However, things are different these days - when someone is psychotic for the first time, the person is looked after maybe in the community, maybe in hospital - it depend's on the individual's case. They are looked after for the first two years by the Early Intervention Team which is similar to an assertive outreach team but deals with cases where the initial cause of the psychotic episode is unknown.

Thursday, July 10, 2003

The acute ward.If you are seriously unwell you get a trip by ambulance from Berwick to the acute wards. Its a long way to go by ambulance and it feels spooky looking out through the back windows of the van seeing Berwick slip away, over the bridge and far away. The acute wards are called Otterburn and Delavel. Otterburn looks after rural Northumberland's patients and Delavel looks after urban Northumberland's patients. Thats a rough guide to patient distribution.

What life is like on acute.Life on acute is quiet usually interspersed with rare moments when someone is "kicking off" - getting violent and the personal alarms start wailing and staff come running in from other wards to help out. Like East Loan, it is the perfect environment for dealing with psychotic symptoms but they are so short staffed that they can't go in to coping strategies and therapeutic activities as much as East Loan can. Which is a pity but a fact of life. If you are well then a mental hospital has got to be the most boring place in the world. Anyway, the first time I was on acute I spent most of my time listening to my hypnotically induced messages and telepathically implanted personalities (idea from Iain M Bank's novels) - I was hearing voices in other words. I don't remember much of my time there as it was a very confusing time. I remember a few people - the friendly lady who looked after the dinners and reminded me to eat when I was too far gone to know it was tea time, the doctor (SHO Senior House Officer?) and consultant who listened to me occasionally, furtively making references to "the gender thing" and seemingly completely ignoring it, basically being intent on targetting my positive symptoms and getting rid of them. Later on life on acute was spent listening to music, walking about the ward, going to O.T (Occupational Therapy) sessions, going swimming once a week, sleeping, eating, going into Morpeth for a walk. Most patients put weight on because the anti-psychotic medication typically makes the patient hungry and you end up eating more than is particularly sensible. This can lead to weight problems and ultimately result in diabetes. Sex in the hospital is frowned upon but couples do tend to (rarely) disappear into the toilets for a bit of nookie. It can't be stopped but they give out antidepressants which diminish your sex drive while making you relatively happy about it. Drugs in the hospital are a big no no, really frowned upon but there are potheads all over the country so you're bound to get a few dopey people doing their best to buy and smoke pot. Another thing you notice about the hospital is that everyone smokes. Staff smoke like chimneys and so do the patients. I am a non smoker and I used to be allergic to cigarette smoke but I've been exposed to so much of it now that I can tolerate it.

Scizophrenia can be controlled but not cured. That means that falling unwell with schizophrenia means a long sentence of taking medication. Normally you don't have schizophrenic symptoms but sometimes they come back, usually in moments of stress and its not fun. I go through periods where I'm hearing voices again, they're telling me to do things and there has been, over time, a wide variety in the voices that I hear. So far I've heard acquaintances, friends, policemen, Satan and a load of unidentified people.

To recap positive symptoms are : Restless, noisy and irrational behaviour (not me), Sudden mood changes (not me), Inappropriateness of mood (not me), Disordered thinking (definitely me), Feelings of being controlled by outside forces - having one's thoughts and actions taken over (definitely me - I thought I'd been programmed with Buffy the Vampire Slayer's combat skills and to attack policemen. It scared me to death when I saw policemen & women walking down the hallway), Delusions (plenty of those), Hallucinations (initially only auditory), Lack of insight - no awareness of the abnormality of one's thoughts, experiences and behaviour (not me I knew something was wrong but what do you do? People don't stop with a "core dumped" error message in general they just muddle on as best they can, Suspiciousness, which in some cases can become paranoia (definitely me, I had two conspiracies chasing after me, the Berwick Conspiracy and the Conspiracy To Keep Me Alive and both of them had implanted artificially intelligent agents in my head to control my body at key moments). The positive symptoms can be controlled by medication.

Negative symptoms can't be controlled by medication and they include tiredness (me - I've been virtually comatose in some of my meetings), loss of concentration (me - I haven't read many books since 2001) and lack of energy and motivation (me). The negative symptoms can be made worse by medication and how the individual reacts to medication is very much an individual thing. I reacted to Olanzapine by slowly becoming someone who ate more (the medication increased my appetite by an incredible amount. At one stage I ate a whole serving of NHS cauliflower cheese and I hate cauliflower and the cheese sauce was incredibly bland).

Back to acute. It is basically a long hallway with individual bedrooms leading off it for women and some men, there are lounges at each end of acute - the smoking room and non smoking room. There is a dormitory for men to stay in with two individual rooms adjoining the dormitory. There are people on acute for substance misuse (drugs and alcohol problems), personality disorders, depression, manic depression (bipolar) as well as that old chestnut, schizophrenia. I got on ok with most people, generally I kept out of the way of people. At the time, I couldn't handle cigarette smoke so I stayed in the non-smoking room which was always virtually empty with hardly any conversation. It had a telly and a hifi which was nice the telly was rarely put on till Sky was donated by a grateful patient and then suddenly we were always watching music TV. The hifi was a nice luxury until it kept on getting vandalised. The smoking room seemed much more lively than the non smoking room, with the radio on the hifi on all the time and conversations ebbing and flowing.

Occupational Therapy (O.T.) on Acute.Fuchsia has been part of the furniture on acute for ages and she has many talents. So what do you do when you're with Fuchsia on acute? Well, the most common group O.T. sessions are art/creative work which for me turned out to be colouring things in with felt tip pens. There were more ambitious art things available to do. Another not quite as popular O.T. activity was relaxation, where you listen to some relaxation music, put your feet up and listen to Fuchsia reading out a relaxation script like being a leaf in a forest stream or visiting a tropical beach. And to do O.T. you don't just turn up and wait to be given a felt tip pen. Oh no, you have to be referred to O.T. - not every patient on acute will benefit from O.T. according to Fuchsia, only patients who have "mental health problems that affect their ability to; socialise, carry out their work, get out and about, look after themselves, manage domestic tasks, develop leisure interests" will benefit from O.T. I initially tried O.T. because I thought it stood for Object Technology - imagine my confusion expecting C++ and Smalltalk discussions and birds of a feather sessions and I turn up and everyone is colouring things in. The OT department believe that "by the use of activity - good mental health can be promoted and maintained. The sessions offered by OT depend very much on the needs of the client - but
hopefully 'colouring in' is not really an accurate reflection of what goes on here!!!".

Individual activities are just as much fun. For instance there was (supervised) access to a computer so I could catch up with Hotmail emails and read The Register. Then there was activities which involved getting out & about on buses - going shopping in Newcastle, getting to know various bus routes etc. Baking was another popular pastime, I'd go to O.T., bake a pie and take it back into acute where the patients would quite happily eat it all up. The O.T. department also had a digital camera so once we went around the grounds of the hospital, taking pictures of the old houses that are due to be demolished when the new hospital is built. Finally, sometimes we just had a chat about things, being ill, music etc.

How things progress from admission to discharge.What my admission was like.I was admitted - let inside the hospital. At about 1.30 in the morning, I think. It was dark and I was really surprised to find that they had a doctor there. Actually, when I got out of the ambulance I thought I was going to be murdered and buried in a field somewhere so to find out I was in a hospital was a bit of a relief. I thought it was a big mistake but figured I'd find things out before rocking the boat. Then I started getting hints that I was actually ill - how bizarre, people were trying to kill me and these crazy people were trying to tell me I was unwell.

What life was like with schizophrenic symptoms for the first & second time.In 1999 I fell unwell with schizophrenia for the first time. It was a full blown psychotic episode and I scoured Birmingham University for help, getting very little. In the end I was seen by a nurse there and she phoned a friend to come and pick me up. I had voices telling me they were going to arrest me for various things I hadn't done, delusions of being kidnapped and it was very scarey. I was put on tranquilisers for some time and in the end BLCMP made me redundant so I went back to Berwick. There I told my GP that I'd had a nervous breakdown and that was that. No follow up. Apparently that was a Very Bad Thing and a CPN should have been involved at least that's what Florence, my CPN in Berwick told me. She kept on apologising for it. I didn't know any better but it seems that the treatment of psychiatric patients outside of Northumberland isn't as good as the treatment inside of Northumberland.

In 2001 I fell unwell again, this time after AESL made me redundant. Not a particularly nice thing to do, I'd been having a great time working as a C++ programmer writing systems in Borland's C++ Builder. My only complaint was that I seemed to be the only person in the place who seemed to read C++ books in order to improve my programming skills - everyone else was too busy shipping products and having a personal life to do that. Anyway while there I wrote a few articles that got published in ACCU's Overload magazine and in general, life was ok despite some major problems like power cuts in Berwick bringing the place to a halt and the trains to Berwick being screwed up by landslides and flooding. I don't know how quickly I fell unwell but it was an acute episode and my next door neighbour got a doctor in when I went to him for help. Thanks to his experience and helpfulness, I was put in an ambulance destined for Morpeth. This time all the voices and delusions of the first episode came flooding back, with more delusions stacked on top of them. It took me a while in Morpeth to come to terms with reality.

Discharge.Eventually I was discharged into the care of Florence my CPN and Ermintrude my social worker. They made sure I was kept on a maintenance dose of Olanzapine which was gradually reduced.

Life on a maintenance dosage without stress was fine. I read messages on the accu-general mailing list, keeping up with programming.

Re-employment and relapseEventually I lucked out and got a job in Berwick at Simpson's Maltings (in 2001) where I was to implement an automated office system. That didn't work out too well in that the stress of work triggered my psychotic symptoms again and I became unwell and readmitted to hospital in Morpeth. I spent even longer in hospital, still getting paid for it despite my contract saying that payment was optional, something that was very generous on behlaf of my employer. Unfortunately, when I got better again they made me redundant. Later on (in 2002), because of the redundancy and the seemingly impossible situation I found myself in I tried to commit suicide but my neighbour intervened and I was taken back to Morpeth in an ambulance again.